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5 new Tysabri-related PML cases--total now 150

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    #1

    5 new Tysabri-related PML cases--total now 150

    The chefarztfrau Website, where someone in Germany who has access to an internal source has been listing Tysabri-related PML cases, has been updated to show 5 new PML cases since early July, with the total now at 150.

    One of the new cases is in the US but the location of the others isn't given.

    You can see the list Only registered and activated users can see links., Click Here To Register....

    Here is a link to the most recent thread about this from the old board:

    Only registered and activated users can see links., Click Here To Register...
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.
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    #2
    Isn't it interesting how Biogen does not provide this info to patients and people have to dig around for it. Makes me wonder what they're trying to hide.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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      #3
      And it's getting harder to find the information too. It used to show up on financial Websites but not so much any more.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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        #4
        This is really getting to be a regular thing it seems to me. I guess it is because so many people have been on it longer.

        Virginia
        Attached Files
        Virginia

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          #5
          Totally irrelevant aside here, but I grew up hearing German and I think about this every time I see a post about this site. "Chefarzt" translates as "head doctor" and "frau" is woman. Is the woman who runs the site a head doctor who wants to remain anonymous?


          Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

          Comment

            #6
            Vicky, I've tried to figure out where the information is coming from, too, but the chefarztfrau Website doesn't contain any clues that I've found. The extended name of the place is chefarztfraulicher:beobachter if that's any help.

            The person in charge has a man's name, but there is no more information about this person that I can find. He has access to internal information somehow and has been maintaining the list for a couple of years now.

            Virginia, this is from Market Watch, July 15, 2011:

            The overall global PML rate is now at 1.62 per 1,000 patients. Of the total PML cases, 57 were in the U.S., 81 were in the European Union and seven were in other areas.

            The company believes that the best way to assess the pool of PML data shows all patients over a fixed duration range of treatment.

            According to that method, the rate is about 1.94 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.54 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

            For patients on the drug for three to four years, the rate drops to 1.34 patients per 1,000, but Biogen doesn't believe there is enough data to conclude that incidence of the infection drops after a certain amount of time.

            Looked at another way, the rate is 2.41 cases per 1,000 patients on the drug for a year or longer, rising to 3.03 per 1,000 for those on the drug for two years or longer, and dropping to 1.85 for more than three years.
            Only registered and activated users can see links., Click Here To Register...

            [EDITED to remove the name, on second thought.]
            Last edited by agate; 08-20-2011, 12:18 PM. Reason: Removing a name
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

            Comment

              #7
              Beobachter just means 'observer'. The 'er' is kind of like adding 's in English. Maybe that person is just pretending to be a woman. No way to know; oh well.
              Last edited by Frog42; 08-20-2011, 04:13 PM. Reason: Seemed like a good idea


              Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

              Comment

                #8
                Whoever it is probably doesn't want much revealed because he/she would compromise the "internal source." The information about the PML cases isn't supposed to be released to the public, but every once in a while somebody knows somebody on the "inside."

                ADDED: I've gone back to my post and deleted the name just in case there might be a problem. Anyone looking at the Website can find the name easily enough, I think.
                Last edited by agate; 08-20-2011, 12:20 PM.
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                Comment

                  #9
                  A friend in FL was diagnosed this summer and I thought she was #131 but the site you posted has no one reported since May 7.

                  Comment

                    #10
                    What were your friend's symptoms? How is she doing now. Is she expected to recover much? What was her treatment for PML?

                    Comment

                      #11
                      What were your friend's symptoms? How is she doing now? Is she expected to recover much? What was her treatment for PML?

                      Comment

                        #12
                        Cherie, I'm not sure why you're not seeing the most recent page of the list of PML cases. I get a page ending with case #150 when I click on it.

                        If you look at the bottom right of the list, there are a couple of arrows where you can go from one page to another.

                        I'm so sorry about your friend.
                        Last edited by agate; 08-21-2011, 07:10 AM.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment

                          #13
                          She is in rehab facility in west central
                          fl and is having motor, cognitive and executive function problems.

                          Comment

                            #14
                            How can something that miraculously helps some, be so deadly to others?

                            Scary stuff.
                            Love, Sally


                            "The best way out is always through". Robert Frost






                            Comment

                              #15
                              Tysabri Is the Best Thing to Ever Happen in the MS World

                              I have been on Tysabri for three years. I previously used a cane, had a leg brace and experienced many falls. I now have almost no symptoms and my condition continues to improve. I will continue to take this drug if the chance were one in ten that I could get PML lesions. I never want to return to my previous status for any reason.
                              I have reduced the chance by getting the infusion every seven weeks since it takes seven weeks before I start to feel fatigued. Tysabri is the 800 pound gorilla in MS treatment.

                              Comment

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